hē′mă-tō-poy-ē′sis ~ pericardium

Poetic Meaning at the Edges of Medicine

Rachel Jamison Webster

Six years ago my partner Richard Fammeree died of the degenerative neurological disease, ALS. In ALS, nerves gradually stop sending signals to the muscles, so the patient remains conscious as he incrementally loses the ability to walk, to lift his arms, to speak, to feed himself, and finally to breathe when his muscles can no longer open his lungs. Because ALS is a disease with no cure, it creates a heightened experience of the no-exit reality of mortality itself. It is a story that can only go one way, and so, like any terminal illness, it exposes the limitations of narrative to describe and understand our lives and our deaths.

Richard was our daughter Adele’s primary caregiver. When she said her first word, dada, the rich tenor of his voice had already begun to thin. By the time she was forming her first sentences, his words had started to slur. As she was learning to walk in our apartment’s long hallway, he was experiencing dropfoot, and then, a year later, gradually losing the ability to walk in the very same hallway, at about the same pace that she’d learned. We were caught between opposing narrative trajectories, and so we could neither locate our meaning in a proposed future or in a recent past.

Birth and death, joy and grief, growing and dying were brought into relationship, the way poetry can bring time into a circle to evoke a sense of simultaneity and echo. This echoing created a heightened awareness—something like what the poet Chloe Garcia Roberts calls “Temporal Saturation”:

High levels of temporal saturation are evidenced by a languorous stretching of the experienced present, which then refracts and amplifies the emotion of the moment. The joy making this spreading pleasurable, the fear terrible, though both poles can be described in terms of the sensation of falling. The difference being that the first is a falling into and the latter a falling through.

*

In the week that Richard was diagnosed with ALS, a social worker from the Les Turner Foundation came to our apartment, bearing enacted sympathy and binders of information. I served pie, and we asked her about herself and her family, and then told her about our lives. After she left, Richard pointed out that I had kept talking about what he used to do. I had told her what he was like as a partner and father—always playing guitar or piano, hosting weekly evenings of poetry and music, taking Adele to the playground every morning. The diagnosis had launched me into a trajectory of grief, and I wanted the social worker to understand what we had lost already.

“Please stop doing that,” Richard said. “It hurts me. I want you to love who I am now, what I am able to do now.”

That was the beginning of the subjugation of my narrative of loss as his partner and caregiver. But more importantly, it was the beginning of our heightened appreciation of the present because the present was all we had. It was the beginning of my deepening education in the ways of love, and in the ways of time.

*

The ordering of time in narrative is a kind of lie, a construction, its linearity all of time that our minds can comprehend. “You must understand that time exists only because we do not grasp it, only because our understanding is small,” wrote the theologian Martin Buber. “In a dream we live seventy years and discover, on awakening, that it was a quarter of an hour. In our life, which passes like a dream, we live seventy years and we waken to a greater understanding which shows it was a quarter of an hour. Perfect understanding is beyond time.”

I kept a journal during Richard’s illness, and at one point I wrote:

Time is our way of living out a little measure of infinity, but our investments in time also block us from time’s fullness. The pasts we’ve stored up, the futures we expect to have—we think of these as ourselves, but they are also a kind of carapace, or bulky furniture, cluttering the present, the expanse that is within and around us all along. I see all of us carrying our stories about ourselves almost like pods around our bodies. In our case, the pods have been blown open, and there’s light streaming through. An agonizing, annihilating light.

An aching brightness is what I experienced—a wide-open attention, coming through a daily dilation of self as I was stretched beyond my will, beyond my capabilities, and as he was stretched beyond his.

The poet Sarah Manguso described this awareness in her memoir “The Two Kinds of Decay,” about her experience of living with CIPD, a paralyzing autoimmune disease similar to ALS:

My existence shrank from an arrow of light pointing into the future forever to a speck of light that was the present moment. I got better at living in that point of light, making the world into that point. I paid close attention to it. I loved it very much.

In this same section of the book she quotes her own journal, writing:

A narrator must keep a safe distance from the story, but a lyric speaker must occupy the lyric moment as it’s happening. Or so it seems to me at this moment.

Sometimes we occupy a lyric moment because we are not granted the narrative distance of an assumed future. Sometimes lyric time is the only time we’ve got.

*

There are different levels of attention available to us in any given moment, and both narrative and lyric modes of awareness. Richard and I were both poets. He had recorded the stories of his life and had written dozens of poems and songs. I kept a journal of his illness that would later become a memoir, letting me both live back in time with him again and forge forward into the darkened, unimagined future without him. We both understood the healing work of narrative. But as poets, we experienced lyric, poetic time as truer than narrative time, and felt most present when the present echoed with the past somehow, or seemed attended by a future that would recall that moment. Lives became stories we lived, for a time, and as we recorded the stories of our lives, we also began to commune with something beyond story, a self or soul that was always ghosting or outgrowing the narratives we’d devised. Because narrative accesses material from the past to construct a relic for the future, it is by nature more of the world of things than the knowing that we discover through poetry. Poems, like rituals, can enter a moment so tenderly that they can exist as perpetual happenings, portals through time, apertures to being.

People who have to let go of their narrative sense of self, of everything they’ve done in the past or thought they would do, are left to acknowledge and cultivate this lyric sense of being. This is the work of the poet: to use one’s singular life as the site of beauty and learning, and to situate meaning both in what happens, and in the porosity and radiance beyond any happening. This is also the work of the terminally ill. It is one of the agonizing opportunities of illness to acknowledge the stories of selfhood that are always ledgered in time, and then to find a way to set them down, and connect with one’s essence within or apart from all that.

There is a self that remains unassignable in objects, including the objective stories that others may tell of us or we may tell about our lives. This self stumblingly becomes the no-self, slipping through the eyes that are windows and the windows that are eyes.

*

By the very end of his life, Richard could not move, feed himself or speak. In those final weeks, some inner development had come to fruition, and we were living beyond story in a kind of wholeness of time. During his last weekend, his room was packed with friends, and the friends started telling stories. They resorted to narrative, because narrative is the worn-in groove. Narrative gives us something to do. They were recalling funny anecdotes from years before, eulogizing Richard while he was still alive, and while he and I were in that heightened poetic state of being—honed through months of holding to the present, of losing everything we thought our lives would be—we could hear very clearly that the stories were a kind of material. They were making him into something material, bounded and portable, an object, a tale, when he still was, when he still had one of the most important things in his life left to experience, which was his own conscious death.

As his friends went on talking, Richard leaned over to me, and said, in his voice which was hardly a voice at that point, “Tell. Them. This. Is. Not. A. Joke.”

The stories were constructions blocking us from the full, expansive present. They were like the cramped, stuffy room we were confined in, or the failing body he was confined in.

It would be a lie to say he wasn’t terrified. He was. But it was far more terrifying not to acknowledge all we did not know, to hear his life compressed into anecdotes that were narrower than the radiance it was, something of the past that was finished, done, when he, as a consciousness, was still growing.

Later, when he was further away, silent and floating in that liminal space between life and death, his two closest friends and I sat with him, holding his hand and rubbing his feet. I put his laptop on and played every one of his songs—songs he’d written in his twenties, and songs he’d recorded just the year before. In their rhythms, rhymes and repetitions, the songs inhabited lyric time. They were written from the moments of his life, but always extrapolated those moments into echoes and connections. They did not summarize his life as a story as much as evoke it as a gift to be received and cycled back. “You into me, me into tree, it’s all one life,” he sang.

Then, less than an hour after the music stopped playing, after his own voice had sung through what it had to sing, he passed away. And his dying was like a poem. It happened through his body, through the confinement of the single form, but it also felt like release, some rhythmic expansion moving out through the room and beyond those windows where I could not see to see.